Tuesday, December 08, 2009

James Delorey, 7 Year Old Autistic Boy, Has Passed Away

James Delorey, the 7 year old autistic boy who was lost in snow and cold in Nova Scotia for 2 days has died. He fought a good fight surviving for 2 days in the woods and for several hours after being found. Any parent has some understanding of the terrible loss suffered by his family. Speaking as the father of a severely autistic 13 year old who himself went missing across busy road traffic, but was fortunate to be taken quickly to a safe location by a good person, this story hurts ... a lot. And brings back vivid memories of the terrible fear that I felt on the day my own autistic son went missing.

I have said little during this tragedy. Yet, the worry does not end with adulthood.

My son with severe (when he was young) to moderate autism (now) disappeared for two entire weeks when he was 21.

There were sitings and yet we and the police couldn't find him. We didn't know if he was alive or dead. And, every time something like this happens, it brings that terror back.

I walked the streets looking for him. It was July. Every night it rained, I sat up wondering where he was sleeping.

We had a happy ending. It was on his 22nd birthday, that I got the idea of visiting the Salvation Army hostel. I had no idea where that idea came from, and can only assume it was because of prayer, but I went anyway.

I asked at the desk if they had seen a tall, skinny guy by the name of Andy. The young fellow at the desk smiled and said yes, he had just come in for a shower.

I stood back in a corner of that entry and all of a sudden, there he was. He didn't see me at first but the supervisor on the desk said there is someone here to see you. He turned around, saw me, lowered his head and then we embraced. I said "Happy Birthday" and then were both in tears. I asked him if he wanted to come home and he said "yes."

His thinking was that he had screwed up and he was ashamed to telephone us. It just didn't seem to occur to him that, because we loved him, we just wanted to know he was okay.

We didn't scold. We were just so grateful he was alive. You see, the police had found a van the night before that had burned with a body of a young tall man in it. We were being asked to visit the morgue to see if he was our son. In fact, I was on my way to do that, when I stopped at the Salvation Army!

Andy explained that when he had gone out for a walk to the store, some guy stopped him and convinced him to hitchhike up north. Then, once there, when his money ran out, they abandoned him. He someone had the presence of mind to hitchhike back to Niagara and being July, had slept in the woods where all the homeless people are said to go.

He's 44 now and talks about it once in awhile. The experience terrified him to the extent that he makes sure he pays his rent on time.

Just thought I would share that. I don't know about other parents of autistic children but what I have noticed is that when they are faced with tremendous stress, something kicks in and they are able to function while under that stress. Even though normally, when faced with the unknown or change, they would just start acting out and screaming.

In many ways, that two weeks was a miracle because our son was never the same again. Still autistic of course, but more moderate than severe.

Therefore, without a doubt, that James Delorey had the presence of mind to slip under heavy brush and hold on to his dog for warmth is a testament to his bravery and what his parents were able to teach him.

My thoughts and prayers are with those parents today and in the weeks and months ahead.

Those parents must be devestated. To feel that you have failed a child that depended on them so and then to live without that stress the rest of their lives... When there was absolutely NOTHING they could have done to prevent it. Nothing at all, which is why I'm glad CBC deleted the crappy parenting comments over the last few days. The guilt would be overwhelming.

My condolences. I'm 49, and only learned of having Autism (Asperger's Syndrome might be more accurate) about 9 years ago. My life has been strange, and learning of Autism 9 years ago explained a lot (it's likely that Savant Syndrome is also at play). However, even after 9 years of thinking, I still have no solution as to how to be a productive member of society. My Autism has been minor, and yet it has still effected my entire life.

---

Even though I have ventured outdoors before knowing I was Autistic (I've camped overnight at -40 in a 2 pound sleeping bag in high school), I have never gone outdoors without the proper supplies (and for most people, a sleeping bag rated for rated for something like 0C and then used at -40 means a person has to sleep in their clothes and jacket). I knew the recommendations say a person can sleep only having underwear on, but since a 2 pound sleeping bag is not sufficient I took enough other clothing to make sleep possible (and not deadly).

---

Fine, I figured out a way to work with insufficient winter supplies. One thing I always enjoyed in that winter camping, was to wake up in the morning, and look around the vicinity of where I was sleeping. It was interesting to see where deer had bedded down within a couple of meters of where I slept, even though I am an enemy (human).

---

I'm sorry, I have no advice on how a future search might come out better. I know if I desired to not be found, nobody was going to find me (easily).

---

I guess a family pet was involved in the issue? My only suggestion might be for a larger pet (maybe a St.Bernard)?

---

Where I am (NW Alberta, NE BC) gets considerably colder than Nova Scotia. I don't think a St.Bernard would help here. It can get just too cold.

This is absolutely heartbreaking. Several times over the years my son has wandered away and been lost. I vividly recall the sharp pain when he was missing. I am so sorry for this family's loss of their beautiful child.

This is so brutal. How on earth do we react to this. The unbearable anguish that James Delorey's family is faced with this week. beyond comprehension.I have been in touch with a few thoughtful, affected people here about how to honour this child and his family. Sounds, trite but after the grief has faded- a lot- something good for another child may result. It is time to mourn and grieve now.

I honestly can not comprehend the pain of the parents and will include James and his family in our prayers. Our son has "run" before but easily found (I am near fanatically vigilant but all one has to do is look down at their untied shoe lace). I know those that do not know our lives will cast all kinds of stones at the parents and that itself is very sad.

To JPY’s point - maybe for the CB Police this case could be motivation to enact a locator program. It sickens me that we have to see such tragedies to prove the need to spend so little to do so much good.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.